Lyme disease can present with a wide range of symptoms, resulting in frequent misdiagnosis. The most common presentation includes fever, fatigue, headache, and a bull-eye rash at the location of infection, but as many as half of infected individuals never report a rash and present with other symptoms.

And, you may be surprised to hear that the most diagnosed illness on CrowdMed is Lyme disease. The issue of misdiagnosing and not even arriving at a diagnosis at all when someone has Lyme disease is clearly a problem.

EDITOR UPDATE: Several readers pointed out some outdated information referenced in the original overview. There’s nothing worse for patients than trying to fight prevailing “wisdom” in the medical community, which simply isn’t true anymore. We’ve updated this post accordingly. By the way, we’ll also soon be publishing an article by one of our patients, highlighting her personal experience and frustration with Lyme disease. Stay tuned!

When searching for a cure for an uncommon disease, doctors and medical detectives are confronted with a difficult knowledge problem. The correct answer is out there, but it’s likely known only to a handful of people, dispersed among a lot of people who haven’t a clue, or worse, have the incorrect diagnosis. How can we separate the knowledgeable from the clueless? The solution might have a lot to do with balloons.

Note: this will be the first in a three-part series about addressing the new world of knowledge about genetic disorders. This first post will be about assessing the chances that we may be at risk for a genetic disease. Future posts will address what we can do with this knowledge.

We live in a relatively new era of medicine in which the genome is sequenced, and we are learning more each year about what genes do and how they might be related to disease. As physicians become more aware of the genetic links between patients and their diseases, patients can and should arm themselves with the knowledge they need to manage this new age of information.

I’d like to discuss a few hallmark features that might be present in your family history which could indicate a genetic disorder in your family. As with approaching the rest of your healthcare needs, knowledge is power!

As the measles virus makes its way back from the brink of extinction, the public sphere has been flooded by heated arguments for both sides of the vaccination debate. For what seems to be the majority of Americans, this is a battle between science and irrationality. Yet amid the media hype and angry rhetoric an interesting theme has emerged in the outbreak’s narrative. In defending themselves through interviews, discussion forums, and even the mouthpiece of political candidates, many parents claimed that trust was at the heart of their decision not to vaccinate. How could they trust that the government, the CDC, or even their family doctor know what is best for their child?

I have always been skeptical of the gluten-free craze. I understand the importance of eliminating gluten products in patients with true gluten allergies, but in the past handful of years, the gluten-free diet has gained a cult-like following. Once known simply as the treatment for patients with Celiac disease, gluten-free diets are now being touted as the solution to every ailment known to mankind, ranging from brain fog to obesity. Will this diet maintain a following for the long haul, or will it fade into relative obscurity, joining the leagues of the Atkins or South Beach diets? Only time can tell, but meanwhile, let’s take this opportunity to sort out the myths from reality.

Using a scale based on average annual base salary, career opportunities rating and number of job openings, career website Glassdoor just released its list of the best jobs in America. And, little surprise, of the 25 they list, a number of them are in the world of healthcare.

But what is surprising is just what positions they list in the field. Physicians don’t make the list at all, for example. Neither do many of the other “top expert” jobs, such as surgeon, that get a lot of the recognition in America.

What would you do if you begged for help for years, but no one listened? What would you do if you needed emotional support, but you got only judgment and ridicule instead? What would you do if you if the world forgot about you?

This is the structural violence that undiagnosed patients experience every single day.

Life with a rare disease can be a lonely experience. Often, no more than 100 or 50 people in the entire world share the same disease. There aren’t the same resources available to these people, or an awareness of the difficulties they face.

Which is why so many people with rare diseases inspire us: they overcome almost impossible obstacles to show us just how much can be accomplished despite limitations and a world that doesn’t understand them.

Below are five beautiful stories (among many) of some people with rare diseases who have inspired many with their bravery and vision.

Practically since the internet was invented, people have been using it to try and figure out what ails them. And today, the practice is so widespread that it is practically ubiquitous. According to a recent Pew study, “80% of Internet users look for health information online, making medical inquiries the third most popular web-based pursuit, following only email and search engine use.”

In other words, whatever any experts say or do, the act of attempting to diagnose ourselves on the internet isn’t going anywhere.

But it would be a fair question to ask, though, if the internet is the right place to go. Are we helping ourselves or hurting ourselves with our attempt to put the medical system back in our hands?

In this age of the information superhighway, the possibility of empowering patients and healthcare providers through enhanced communication is better than ever before. The use of electronic devices allows both patients and healthcare providers to learn more, organize information and communicate better.